Since our daughter was little, we’ve worked with cardiologists, neurologists, therapists, orthotists, geneticists, pharmacists, speech pathologists—so many “ists.”. There was a time when I followed a specialist’s advice without question. They were the professional—the expert. Who was I to question them?

That was then. Now I question everything. I research every word. I seek second and third opinions. I don’t care about the glares. I don’t care if I’m disliked. I do care about my children. They are my priority.

Last week my husband took the kids to his parent’s while I hosted a party at our house. At 11:30 p.m. he phoned to say an ambulance was coming to take Avery to the hospital. She was having a seizure that wouldn’t stop.

I met them in the ER. The seizure eventually stopped on its own, without medication this time. They eventually sent us home and told us to follow up with our neurologist. The following afternoon, I put Avery down for her nap. Thanks to our generous family, we now had a video surveillance camera in her room. I could see her lying in her crib on her side, staring, not blinking. I ran to her room as her eyes began repeatedly flicking from the centre, to the right.

I checked the clock and started timing. I screamed for my husband who was working in the yard. At the five minute mark, I phoned 911. She was still seizing and she vomited. She began to choke. I reached in and pulled out a long strand of spinach, brought up from her lunch and now caught in her throat.

Despite removing the food, she was turning blue. She had stopped breathing when the paramedics finally arrived. She was still seizing when we got to the hospital. Seizures generally last a few minutes. This one lasted well over 30 minutes and required multiple doses of medication to make it stop.

This was the first seizure my husband and I had seen from start to finish and it was the worst thing I’ve ever seen in my life.

We were told the pediatrician on-call was on his way. We waited nearly five hours before he came to see us. I was livid. Not only because we had to wait so long, but because this was the infamous doctor I had taken Avery to see. Years ago, I went to him to address milestones not being met and to find out why it was such a struggle to feed her. She was losing weight and we were justifiably concerned.

I needed his help but he made me feel like I was a hysterical mother making something out of nothing.

He walked over to our daughter who looked so tiny, lying on a gurney in the hallway of the ER and said, “Hi folks. How are you?”

“Uh, not good,” I told him.

“Of course,” he said. “This is Avery? How’s he doing?”

“SHE is not well.” we told him. “Actually, you’ve seen her before. Several times.”

“Oh really?” he remarked, casually flipping through his notes.

“Yes, REALLY!! (This outburst got his attention). Do you know what you told me when you saw her? YOU TOLD ME TO RELAX. You said Avery would be fine. You said she would eventually eat, but I needed to try harder.”

I reminded him that when we came to him for help, he dismissed us. He made me feel ridiculous. He told me I needed to relax, but to also do more?

I told him that I didn’t take his advice and instead found help elsewhere. And our concerns, the ones he belittled, were validated.

Firmly, though I was shaking and close to tears, I told him that we would not be staying at this hospital. We were going to be transferred to the university hospital to be seen at the Seizure Disorders Clinic.

He didn’t say anything. He just nodded and left.

A few minutes later he returned and said an ambulance would be there to transport us to McMaster Hospital within the hour.

Then he totally caught me off guard by thanking me.

“I respect you for having the guts to tell me I made a mistake”He said. “I needed to hear that. Thank you.”

A weight lifted—I felt relieved that Avery was on her way to a place where she would be looked after and we would hopefully get some answers and guidance. I also felt relieved to shed the heavy burden of resentment I’d been carrying.

I’m not the most assertive person. I will do anything to avoid confrontation, but when it comes to advocating for my children, all bets are off.

In this doctor’s defence (this is what we do once we’ve made peace—we put ourselves in their shoes) I don’t blame him for missing this diagnosis. Nobody could’ve guessed it. Avery’s disorder is one-of-a-kind rare. Her symptoms mirrored so many things. To him, she was a normal baby, maybe smaller than normal, but healthy enough.

After years of dealing with hovering, hypochondriac parents who diagnosed their kids with scary ailments via Dr. Google, I can imagine he was skeptical when presented with a seemingly typical baby in the arms of a nervous mother.

That said, doctors must always listen and give their patients the benefit of the doubt. Parents know their kids best. And doctors can’t always, statistically be right.

12 Comments

this post brought tears to my eyes. I totally believe in standing up and advocating for our families because we really are the ones who spend the most time with him. I am also impressed that the doctor admitted to being in the wrong….it not only released you from your anger it hopefully will help him to grow as a physician.

Oh lady, I'm sorry that happened. Well done you for standing up to the doctor and demanding what you wanted. You should expect nothing but the best treatment for your daughter. I'm wondering what happened next – did she go to the other hospital and were there any answers there? Hope so. Hugs.

You GO, Lisa!! Your Mom referred me to your blog, knowing what you've gone through in terms of advocacy was mirrored in what Ken and I had gone through in the past 3 years. I'm so proud of you… stand up!! Question everything!! Your tenacity, personal integrity and values will not let you down — now, or ever! (with love, and hugs for Avery! ~Gail)

No one really tells you when you become a parent that you will also become an advocate and a loud one at that in order to get the things you need for your child(ren).

Good for you for listening to your intuition. I'm also really proud of you for telling the doctor what he/she needed to hear. You've made a difference in the lives of other children that will be going to see that doctor in the future.

Lisa,This is the first time I heard the other part of the story. It was heart breaking watching you walk out your door on that Friday night with Avery's stuffed animal in your arms. The whole drive back to Kitchener I worried about all of you. You are an incredibly strong and loving mother. I am honoured to call you friend.

Oh, wow. How scary. I am so, so sorry. And you are THE BEST MOM ever for speaking up and for asking questions and for saying what is on your mind. When it comes to your child's health, screw good manners. I have been the same way – when my son was in CHEO for two weeks with his pneumonia I asked a billion questions, I made sure I understood what the docs were doing, etc. Good for you for speaking your mind. I hope you get some answers! Take care… xoxo

Oh Lisa…..I have tears at work. You go girl!! You are an amazing Mom and Avery is so blessed to have you. It's so scary when we learn that we can't always trust what doctor's recommend. I think anyone that has had a child with medical issues eventually learns that. You are such an inspiration. Big hug.

Hi Lisa,I wanted to know more about how our lives and our journeys were the same…what a scary story and another example of how Mommy Warriors need to fight for their kids at all costs. Doctors are human, and while they are incredibly talented, they make mistakes and need to know. I've confronted several doctors telling them what my son needs or even that their words hurt us and could have been said with more respect (totally NOT my personality, but again, I'll do anything for Zack).Avery will learn from you how to advocate for herself…the best gift a mommy can give! Well done!